About Disability

These are trying times. What do you think the disability community should be focusing on now?

I have actually been thinking of this.

I’d like to get rid of the idea that people with visible disabilities are somehow more disabled than people with invisible disabilities. We are all marginaliized by a society that’s inaccessible in too many ways, and we should work together.

If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say? It’s all good. Even when it sucks, it’s still all good.

I’m recruiting! Well, seriously, I have Larsen’s Syndrome, a rare congenital joint disorder, and I have been described by loving genetics counselors as a “random genetic mutation.” Five years ago, I adopted a little girl from a children’s home in Ukraine who has a similar disability. We’re building the disability family locally and globally.

Star Trek or Star Wars?

Neither. Star Search.

If you could live in any other country for 2 years, where would you go?

Thailand for the food.

What dish would your bring to our community picnic potluck?

Paletas.

Now That We’ve Been Introduced…

What do you do:

I run a small state agency on the left coast that helps families and schools resolve conflicts collaboratively and informally. Before that, I spent some quality time in law teaching, where I focused on disability rights law, workers’ rights, criminal law, and social justice. I like to think that I have a day job and then some missionary work within it to improve state government to be more responsive to disability and understanding of it as a potential source of strength and community. At least, that’s the job within my job that I’ve given myself.

How did you come to doing what you do? How has your career trajectory flowed?

I went to law school relatively pissed off about the position of people with disabilities in society. Shocker: I saw few people like me there, at least on the disability issue—and even fewer in my eventual path to being a law professor. I thought being a lawyer would be an effective tool for change, but the Law itself, as a profession, is hard on people with disabilities—just as it on anyone who is “different.”

After graduating and having a miserable clerkship experience, I got a Hearne Award from AAPD and decided to use it to start a disability nonprofit focused on the employment of emerging professionals. Eventually, I realized that I stunk at fundraising, and turned that idea into consulting work. At some point, a friend sent me a job posting for teaching online in an MBA program. I picked up a corporate social responsibility course (which, ironically, I am back to teaching again now that I’ve been away from law teaching).

Teaching was fun, but adjunct online work pays nothing. I eventually came to the idea of trying law teaching because it would pay me to write about things that I cared about and interact with interesting students. My law teaching career took me from State College to Tulsa, Chapel Hill to Cleveland, until I eventually decided that at the age of 35, I needed to feel like an adult and pick my location, which meant exiting law teaching. I spent some time after with my daughter and discovered how difficult it was to navigate the public school system. If I couldn’t figure it out, who could? That drove me back to school for a master’s in education policy with a focus on racial equity, language access, and disability rights. I found my job first as an intern at the agency—and then right as I graduated with my master’s, the directorship came open. I’ve been in this job for 2.5 years now and it fits me pretty well.

Where would you like to see yourself in 5 years?

Spending less time on I-5. Less stressed. Still engaged in meaningful work that challenges me to learn and grow with and from others. I’d love more time for hobbies, friends, and family. Sometimes, the personal connection to this work tires me and I can bring it home. In five years, I’ll have better skills for that, right?

PS- Sometimes, I just want to run something bigger to show that disabled folks need to be everywhere, but I also realize that accumulating power isn’t my career goal in the end.

Not to be morbid, but what do you want people to remember about you when you’ve gone?

That I wasn’t afraid to be myself and thought the process of getting there was worth the hiccups. Also, they could remember that I was funny, irreverent, and caring.

Who or what inspires you?

I’m inspired by people who are creative and passionate but often under-supported. Artists. Disability advocates. Community organizers. A sunny day in Seattle is fairly inspiring, too.

About Disability

If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say?

I didn’t even know about disability identity and community until college. I wish that I would have found it earlier rather than hearing so many overcoming/inspiration messages from the outside world.

These are trying times. What do you think the disability community should be focusing on now?

As a community, or set of communities, we should be focusing on how to support racial equity within our movement and also collaborate with and show up for movements for racial equity. From my vantage point, we can begin this work in schools where we see disproportionate discipline rates for students of color with disabilities, English Language Learners with disabilities, and other marginalized students. Many of us had negative experiences in schools. For me, that meant trying to convince myself that education was fixed for students with disabilities. If I could convince myself that work was done, I could focus on other issues such as employment and deinstitutionalization. My avoidance was a coping strategy. Special education still looks like a place of segregation, even more so for students of color and immigrants and refugees. I no longer believe that truly meaningful work will happen by just focusing on special education. We must look at the education inequities and structural racism shaping the entire system.

What do you like about your particular disability?

The parking, baby. Just ask my friends.

And I also love that it helps me understand what my daughter is facing growing up.

Any one thing that you wish people would *get* about disability?

I don’t want to be celebrated because of my disability. A charitable approach to disability upsets me greatly and no one likes me cranky.

What’s your connection with disability? I have spinal muscular atrophy and need assistance with all activities of daily living.

Star Trek or Star Wars? Definitely Star Trek: The Next Generation.

If you could live in any other country for 2 years, where would you go?Deutschland!

What dish would your bring to our community picnic potluck?I’d bring something delicious and easy to stab with a fork. Maybe Schwartzwaelder Kirschtort?

Now That We’ve Been Introduced…

What do you do:I lead the employment practice group at Indiana Disability Rights, my state’s protection and advocacy agency. If a Hoosier with a disability faces discrimination at or applying for work, or if someone has a dispute with Indiana’s vocational rehabilitation program, I’m here to help! Although we make efforts to resolve cases in the least adversarial manner, sometimes my clients and I end up at administrative hearings or in court.

How did you come to doing what you do? How has your career trajectory flowed?I never anticipated litigating! My academic credentials include a JD with an emphasis in health law, a MA in bioethics, and a LLM in Health Law, Policy & Bioethics. I wanted to work at a hospital, participating on its ethics committee and serving in an advisory capacity. However, I entered the legal market in 2010 when there was one job opening for every two unemployed attorneys in Indiana.

I searched for nearly three years before getting hired by the Indiana Family & Social Services Administration. There, I began as an administrative law judge, writing decisions to end a major backlog. When that task was complete, I was transferred to a staff attorney role, advising agency divisions on matters ranging from opioid treatment centers to First Steps.

When I transferred to Indiana Disability Rights, I was given the opportunity to advocate for people with disabilities rather than against them. Initially, I worked on a variety of disability rights issues, from education to Title III ADA cases. After a reorganization, I was placed in the employment practice group. In addition to helping people get or remain employed, I’m also privileged to supervise Indiana Disability Rights’ legal interns.

Where would you like to see yourself in 5 years?Litigating across the entire state is beginning to wear on my weakening body. Eventually – maybe in five years, but time shall tell– I would love to become a law professor. It would be a dream come true to teach younger generations about civil rights laws, including their intersection in the world of bioethics! I would also like to continue volunteering with the Fairbanks Center for Medical Ethics, providing a disability perspective on healthcare and bioethics.

I dearly hope that I will have the stamina to continue advocating for people with disabilities outside of work time. Currently, I serve on the Indiana Governor’s Council for People with Disabilities, the Indianapolis Mayor’s Advisory Council on Disability, and the Fair Housing Center of Central Indiana. I hope that I can work with peers from these organizations to develop a more aggressive public policy agenda for people with disabilities. Within five years, I would love to see Indiana offer consumer-directed care options for all Medicaid beneficiaries needing personal care. And a visitability ordinance in Marion County. And Indiana devoting a greater percentage of its Medicaid budget to home and community-based services rather than institutional care. And on and on…

Not to be morbid, but what do you want people to remember about you when you’ve gone?I hope people remember me as a person who refused to take “no” for an answer; I do not pay heed to so-called barriers, and I am relentless in pursuing my ends. That sounds a bit Machiavellian, but I do hope people remember me lovingly.

Who or what inspires you?Being a person with a disability, the word “inspiration” automatically makes me shudder. Getting past that instinctive reflex, I’d have to say John Frusciante. People probably best know him as the former guitarist for the Red Hot Chili Peppers, but he has an interesting solo career. Much of his music is downright bizarre, but I cannot get enough of it! Something about the music resonates deeply within me and makes me feel like Frusciante is a kindred spirit. The ability to reach people in that way is amazing. I also love that Frusciante doesn’t really care what others think about his work. His devotion to creation inspires me.

About Disability

If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say?I don’t like thinking about changing the past. I have no regrets about decisions I made in my youth, and I worry that giving myself knowledge from the future would fundamentally change the person I am today.

What do you like about your particular disability?It may sound obnoxious, but many of people I’ve met with spinal muscular atrophy have a wide vocabulary and high IQ. Some speculate our intellectual functioning is so well-developed because other qualities, such as physical coordination and strength, are underdeveloped. Regardless, I’m grateful that I’ve had the opportunity to be something of a lifelong learner.

Any one thing that you wish people would *get* about disability?I think many non-disabled people failed to recognize that life with a disability can be – and often is – fantastic! I’m a practicing attorney. I have a good family that supports me. I am leaving for a Moroccan vacation in two days. Life is good!

What single piece of technology makes your life easier?My BiPAP has literally saved my life, breathing for me at night because my diaphragm muscles get too tired to do the job. In fact, if I were born any earlier than I was (i.e., in 1984), I doubt I would be alive today. Ain’t technology grand?

and…

Emily Munson: a woman with dark brown hair and dark eyes looks directly at the camera. She has a slight smile and her eyes are bright and friendly. She is wearing a green necklace and a dark aqua shirt.

What’s your connection with disability? I was born with Cerebral Palsy.

Star Trek or Star Wars? Star Wars

If you could live in any other country for 2 years, where would you go? New Zealand

What dish would your bring to our community picnic potluck? Veggie Tray

Now That We’ve Been Introduced…

What do you do: I work full time for Easterseals Crossroads as a Retention Specialist. I help individuals with disabilities maintain employment.

Easterseals Crossroads has been around for over 80 years, serving more than 7,000 consumers each year, providing numerous services to individuals with disabilities.

How did you come to doing what you do? How has your career trajectory flowed?

Easterseals Crossroads throughVocational Rehabilitation assisted me in finding employment over ten years ago, with an Independent Living Center that helps individuals with disabilities achieve independence. During this time, I was encouraged to apply for and was accepted into the Partners in Policymaking academy for the Governor’s Council for People with Disability and graduated in 2009. This training helped me to lead the Indianapolis Back Home Indiana Alliance. This also helped me to conduct presentation and disability education awareness workshops and outreach for inclusion.

The month of March is National Disability Awareness month. The Governor’s Council for Disability produced a video to promote inclusion and equality for individuals with disabilities. I was excited to be invited to participate in making the video as well as appearing on radio and tv talking about the program and my experiences. They have a lot of information and resources on their website at indianadisabilityawareness.org or social media #Becoolweare.

Where would you like to see yourself in 5 years? I would like to see myself eating healthier and exercising more.

Not to be morbid, but what do you want people to remember about you when you’ve gone? I want people to remember that I loved God, family and friends. I also never gave up and helped change people’s perception of disabilities.

Who or what inspires you? What inspires me is when an individual achieves a goal that society believes is impossible.

About Disability

If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say? When peers verbally bully you realize that person bullying you has low self-esteem and may have been bullied themselves. No matter what don’t give up and keep being you.

What do you like about your particular disability? Cerebral Palsy has opened my eyes to people’s true nature. It has helped me to understand that it is alright to be different.

Any one thing that you wish people would *get* about disability?

While we may have differences, we also share similar dreams and aspiration such as friendship, acceptance, love and many other things.

Find Marcus on social media:

Welcome to “Voices from the Disability Community: – the series that introduces interesting people with various disabilities by asking the same set of questions to everyone. The point of doing that is share the diversity within the disability spectrum and experience, and get to know some cool people.

Getting to Know You

If you could live in any other country for 2 years, where would you go? England

What dish would your bring to our community picnic potluck? Truffle Rissotto or flourless chocolate cake.

Now That We’ve Been Introduced…

What do you do: I’m an Energy Therapist, hypno-therapist and author.

How did you come to doing what you do? How has your career trajectory flowed?

I have always had an interest in healing, and in energy. Then I got diagnosed with Lupus and really got into trying out healing techniques of the alternative kind, and studying the ones that worked best for me, so I could continue to heal myself. It was a successful experiment, I got my Lupus into remission, I’m off medication and have been for about five years. After being well for a while, knowing it had stuck, I followed a friend’s advice and wrote the book about my story: the diagnosis, the disease, the things I tried, how they worked, etc. My book is a guide for those looking for better health and wellbeing to delve into the world of alternative healing with a map, my map. After all, there are a lot of things being offered out there and it can be daunting at first. Knowing someone else’s experience in the matter can be very helpful. I hope.

Where would you like to see yourself in 5 years?

I would love to see myself speaking and writing more books, getting the message of hope for chronic illness sufferers out there, helping as many people as possible to feel better and live productive and happy lives, to thrive.

Not to be morbid, but what do you want people to remember about you when you’ve gone?

That. That I helped some of them feel better, that my life and illness had purpose and reason.

Who or what inspires you?

I’m inspired by people who have come back from apparently hopeless situations changed, with greater insight and a desire to be of service, like Anita Moorjani.

About Disability

1.If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say?

There is hope. Do not despair, this will get better and even be a meaningful part of your life.

What do you like about your particular disability?

I like that it’s really tough to manage. It changes on me all the time, my body gets used to the healing techniques and goes off on tangents. It’s always evolving, and so it keeps me studying and researching, on my feet as it were. I can never take it for granted, and that keeps me growing constantly as a person.

Any one thing that you wish people would *get* about disability?

Mainly that we don’t choose it, we are not lazy or feigning our symptoms. We might look well and still feel terrible. I would like them to get the incredible challenge we are constantly faced with, not only to survive but to try and fit in with “regular” society, and have “normal” lives. Our culture is not designed for people with disabilities and when you have them you are always a little on the outside looking in. It’s tough.

What single piece of technology makes your life easier?

I’m not a big fan of technology, but faced with that question, I would have to say the Internet and laptops. They give me a way to communicate with others like me, even if some of them are too sick to leave their home or live in different countries. Laptops have made research and writing easier.

Welcome to “Voices from the Disability Community: – the series that introduces interesting people with various disabilities by asking the same set of questions to everyone. The point of doing that is share the diversity within the disability spectrum and experience, and get to know some cool people.

This week I’m delighted to introduce Steve Brown to you!

Getting to Know You

Your name: Steve Brown

What’s your connection with disability?

What a big question. Highlights: I have a disability that showed up when I was five—I limped for no apparent reason—called Gaucher disease (GD). When I was diagnosed, in the late 1950s, no one knew what caused GD (http://www.gaucherdisease.org/); now they know it’s a genetic, metabolic disorder related to a low-producing enzyme. I also became involved in the disability rights movement in the early 1980s after being discriminated against in an employment situation.

This led to becoming involved in the first Oklahoma independent living program, now called Progressive Independence, and other Oklahoma, regional, and national disability rights activities. In 1990, I moved to California, where I started to work at the World Institute on Disability and where I met my wife, Lillian Gonzales Brown, who also has a disability. In 1993, we moved to southern New Mexico and there we created the Institute on Disability Culture. We have moved the Institute from New Mexico to Hawaii and now to California.

In Hawaii, I worked at the Center on Disability Studies at the University of Hawaii (UH), where I was involved in several programs, in the start-up of the Review of Disability Studies: An International Journal, and in teaching Disability Studies courses. I still teach at UH, now all online from California, a course I created called “Disability History and Culture: From Homer to Hip Hop.” And, finally, I have other family members, and many friends with disabilities.

Star Trek or Star Wars? I’m not passionate about this question. I like both when they’re good.

If you could live in any other country for 2 years, where would you go?

Probably France or Peru. France, because I’ve had a passion to go there since I was a kid and have not made it yet, and because it’s close to a number of other countries; Peru because Lillian is half-Peruvian but I haven’t made it there yet either.

What dish would you bring to our community picnic potluck?

I’ve always been known for bringing potato chips and–no matter how healthy the group claims to be—I rarely return with any. My wife, on the other hand, bakes up a storm of delicious desserts. So it may be that…

How did you come to doing what you do? How has your career trajectory flowed?

In the early 1980s, I graduated with a doctorate in history from the University of Oklahoma (OU). Jobs for historians were scarce and I had a one-year lectureship from OU to teach introductory history courses. During that year I had two students with disabilities who connected with me and introduced me to what was then called the Independent Living Project (ILP). I began to do some volunteering for the ILP. When, the summer after my lectureship ended, I still didn’t have a job I was thrilled when my department chair called with a lead on writing a history of a company in Tulsa.

I was overjoyed and threw myself into getting that job even though it was not my specific field—but it was a job! Verbally, I was hired. But when the company learned I used crutches they decided I didn’t have the stamina, energy, and ability to research and write a book. I protested in every way I could but in those pre-ADA days, there wasn’t a lot I could do. I started volunteering every day at the ILP and when a new position opened that fall I applied and got it and became a skills trainer, peer counselor (in the language of the time) and community organizer.

It was an incredible job, with wonderful people and mentors who I’m still friends with, but we walked out in 1984 over the issue of what was then called “consumer control.” It was a radical, and at the time, well known action, nationally. Three years later I was hired to become the director of the project and oversee it’s becoming a “consumer-controlled” organization, which meant at least 51% of the Board and staff were individuals with disabilities. At the same time all this was going on I also became interested in the idea of “Disability Culture” and the rest is detailed in other responses and in my books.

Where would you like to see yourself in 5 years? As a full-time writer, or at least as much time as I’d like to be focused on writing.

Not to be morbid, but what do you want people to remember about you when you’ve gone?

That I did my best to impact the world positively and that included “Promoting Disability Pride.”

Who or what inspires you?

I am inspired by a lot of people and things. From Al Kaline, one of my first heroes, a baseball player, who constantly injured himself, so I knew he, like me, knew about pain; to my daughter and her husband, who are two great people raising 2 incredible children; to my wife, who is the most heart-felt person I know; to the amazing advocates, young and older, who are constantly changing the landscape of disability here and internationally, to those I have called “Martyrs” (http://www.instituteondisabilityculture.org/martyrs-the-poem.html), individuals with disabilities (mostly), many of whom have given their lives to the cause of disability rights; to my parents, who made sure I lived a typical life, instilled a sense of justice and independence and wanderlust; to my sister and brother, for the lives they’ve created; to the ocean and mountains and sun.

And after I wrote this response, I kept thinking of more things and people—like I said lots of things inspire me.

About Disability

If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say? That I would live much longer than I anticipated and that, in time, because of my relation to disability and disability rights I would travel the world, meet all kinds of fascinating people—many I would call heroes—find work I loved and meet an inspiring woman; incredible daughter and her family—so, there are many great reasons to hang in there.

What do you like about your particular disability? It has probably been my greatest teacher.

Any one thing that you wish people would *get* about disability? It’s everywhere, it always has been and always will be and just like any other aspect of life it has ups and downs, but it is a shade of the rainbow that colors all our lives, individually and collectively and if we recognize disability as such, instead of trying to eliminate it or overcome it or change it we can adapt to its presence in our lives, individually and collectively, and understand it is simply part of who we (individually and collectively) are, and we can celebrate it as a part of each of us and the world.

What single piece of technology makes your life easier?

Computers—I would not be able to write, teach, or do a lot of the other work I’ve done over the years without it—I bought my first computer in the late 1980s—it didn’t have a hard drive, I didn’t have a printer, and it used large floppy disks—but I started writing again, because I had it and it didn’t exacerbate the arthritis in my hands like typing or handwriting (which no one, including me, could read…)

and…I’ve benefitted from using manual and motorized wheelchairs, a “chairtopper,” and accessible vans.

Welcome to “Voices from the Disability Community: – the series that introduces interesting people with various disabilities by asking the same set of questions to everyone. The point of doing that is share the diversity within the disability spectrum and experience, and get to know some cool people.

This week I’m happy to get to know Eva Sweeney along with you!

____________________________________________

Getting to Know You

Your name: Eva Sweeney

What’s your connection with disability?

I was born with cerebral palsy, which for me effects all my muscles. I use a wheelchair to get around and I’m non-verbal so I spell out what I want to say on a letter board.

Star Trek or Star Wars?

Uhhh, neither lol

If you could live in any other country for 2 years, where would you go?

I have always wanted to go to Spain. I took Spanish all through high school and I studied artists from Spain, so I think it would be cool to visit.

What dish would you bring to our community picnic potluck?

Cheesey fries. My favorite!

Now That We’ve Been Introduced…

What do you do:

I’m a writer, sex educator, and I have made a documentary. I generally write about sexuality and disability, being queer and disabled. My documentary explores the relationships between people with disabilities and their aides. It’s called Respect: The Joy of Aides, and you can rent or buy it on Amazon. I found most of the media representations of these relationships focused on abuse and being taken advantage of. While that is super important to talk about, I wanted to show the other side. I’m also a consultant for the ABC show Speechless and that has been an awesome experience!

How did you come to doing what you do? How has your career trajectory flowed?

When I was a teenager and just coming out and also just becoming sexually active, I looked for information about being disabled and having sex, and found no good resources. So with the help of a friend I created a small guide titled, Queers on Wheels. It discussed how to deal with dating when you need assistance with everyday things, choosing and adapting sex toys, and hiring and maintaining aides who respect all of who you are. I then toured the U.S. giving workshops on these topics. Now I don’t have the energy to really tour, but I still write about it for magazines and blogs. There is way more awareness now, too, so it is fun to collaborate with other folks doing similar work!

Where would you like to see yourself in 5 years?

I would love to be working at a feminist sex shop helping people with disabilities choose all kinds of sex toys. I would also still like to give workshops.

Not to be morbid, but what do you want people to remember about you when you’ve gone?

I would like to be remembered for my awesome sex and disability advocacy work.

Who or what inspires you?

Not to sound inspiro-porny, but when I give workshops and middle aged people with disabilities say that was the first time they talked about sex in such an open way, that inspires me to keep doing this work.

About Disability

If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say?

I really wish I had taken advantage of UC Berkeley’s disability program. I went to a school in Los Angeles, which was okay, but I would have really benefitted from the life skills taught in the program.

What do you like about your particular disability?

That it weeds non-genuine people out of my life (for the most part). Because my disability is so “severe” and I communicate in a different way, people have to take the time to get to know me. Without my disability, I might have more casual friends and acquaintances, but instead I have really good close friends who get me.

Any one thing that you wish people would *get* about disability?

Yes. I really wish the general public would understand that even though someone is non-verbal, they can still understand and communicate.

What single piece of technology makes your life easier?

I would definitely say my communication system, which is just a laser and a board with the alphabet and common words, not only makes my life easier, but is vital to my well-being.

Welcome to “Voices from the Disability Community: – the series that introduces interesting people with various disabilities by asking the same set of questions to everyone. The point of doing that is share the diversity within the disability spectrum and experience, and get to know some cool people.

This week I’m delighted to feature my buddy, Carly! Carly and I have been friends (who haven’t met in real life yet) since..when? I think that whole blowout with The Mighty? I distinctly remember messaging her while I was in Cambodia and being really grateful for her voice. So now you get to meet her, too!

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Getting to Know You

Your name: Carly Findlay

What’s your connection with disability? I live with a disability, though I didn’t identify with having one until my late 20s. My disability niche, if you like, is appearance diversity – living with a facial difference. I have a rare, severe, painful genetic skin condition called Ichthyosis.

Star Trek or Star Wars? Ha! I have never watched either. My husband is a big Star Wars fan. He wanted a Star Wars themed wedding. I said no. He wore a Star Wars Disney pin on his lapel and Yoda socks with ears. He encourages me to watch Star Wars but so far I’ve avoided this.

If you could live in any other country for 2 years, where would you go? I love the UK. I love London – the cool weather, culture, food and shopping is my thing! I’ve got a British passport so I could actually do it.

What dish would your bring to our community picnic potluck? I made a fantastic chicken dish from Yottam Ottolenghi last year – it had rice, cardamom and berries in it and it was delicious. I’d bring that. I love to cook.

Now That We’ve Been Introduced…

What do you do: I write and speak about disability, chronic illness and appearance diversity. I run Facebook groups for bloggers with disability and chronic illness, and also people living with Ichthyosis. I also connect people with Ichthyosis, give advice to new parents and adults living with the condition. In 2015 I organised Australia’s first Ichthyosis meet. I am also a wife, a bad housekeeper but great cook, host a podcast, love to travel, love live music, enjoy reading and devote my life to fashion.

How did you come to doing what you do? How has your career trajectory flowed?

I’ve enjoyed writing from an early age, writing stories and reading a lot at school. I always wanted to be a journalist but I grew up in a small rural Australian town which didn’t have any universities with media courses nearby, and my parents hesitated to send me away to a city university because of the expense and my health.

I studied a Bachelor of eCommerce at a local university, and then moved to Melbourne for work when I was 21. Two years after that, I commenced a Master of Communication (and took seven years to complete it because of full time work and my health). While I had been blogging on and off since 2001, it was never for professional reasons. Midway through my Masters, I started my current blog, then called Tune Into Radio Carly, so I could implement some of the things I’d learnt in my studies and create a portfolio.

Initially I didn’t write about living with Ichthyosis but once I did, it received such a great response from readers that I decided to write more. I pitched myself to a disability focused government website and wrote for them for a few years. One of the pieces I wrote for the government was republished on a large Australian women’s website, and that was the start of writing for mainstream media.

I have won a few media awards, one of which allowed me to do a course about writing and pitching for magazines. And that gave me the confidence to pitch to online publications. Many articles have been picked up because an editor read my blog. And I dabbled in speaking at my day job, which I let people know about, and now I receive requests to speak at a range of events.

Because of my blog I spoke at a university overseas, and was the speaker before Australia’s first female Prime Minister, Julia Gillard, at an event in Melbourne last year. I have recently dropped my day job hours to part time so I can write and speak more, and this has been quite successful so far!

Where would you like to see yourself in 5 years?

I’ll still be writing, hopefully for international media. I want to be doing regular TV and radio, be on my way to completing my doctorate, have written a memoir and a children’s book (hopefully best sellers!), living in our own home – no longer renting – and planning another overseas trip.

Not to be morbid, but what do you want people to remember about you when you’ve gone?

Every so often I get messages like this: “Because of you I caught the train, went to a very busy shopping centre, caught the train home again… in a sundress.” “After reading your posts and blogs and responses I feel that I now have the strategies to deal with anything that comes my way and I have an insight to how others feel/react. Thank you for empowering me”

I hope I can still empower people through my words – giving them permission to love and have confidence in themselves while living with Ichthyosis, a facial difference or a disability.

Who or what inspires you?

I admire people who keep on with their disability activism despite all of the challenges: those who shoosh them, people who don’t understand it, harassers, a crowded mediascape and the daily challenges of living with disability. People like you, Alice Wong, Dominick Evans, Vilissa Thompson, Jax Jacki Brown, Michelle Roger and Elisha Wright (and countless others), and of course, the late Stella Young. I also admire resilient feminists like Clementine Ford, Celeste Liddle, Lindy West and Tara Moss, and online creatives like Pip Lincolne, Emma Gannon, Liv Purvis and Dawn O’Porter.

What do you like about your particular disability? My skin heals very quickly when I fall over or cut myself. It renews very quickly – 28 days worth of skin in one day! Today I fell down the stairs and it throbs and I’m miserable, but I know I’m a couple of days, the cuts will be healed. Also, this means I look really young. I’m 35 but could pass for 25. Adam says when I’m 100, it will look like he’s married to a 50 year old.

Any one thing that you wish people would *get* about disability?

That it’s nothing be ashamed about, or to be hidden. Disability is a part of our identity and culture. Being involved in the disability community feels like home.

Also – I’d love it if parents would listen to the experiences of actually disabled people. I’m always so thankful when a parent writes to me to thank me for my work.

What single piece of technology makes your life easier? My iPad. I do everything on it. Write, listen to podcasts, reply to emails, read books, watch TV. I love that what I write on my iPad is synced with my iPhone – I always have my writing with me.

Welcome to “Voices from the Disability Community: – the series that introduces interesting people with various disabilities by asking the same set of questions to everyone. The point of doing that is share the diversity within the disability spectrum and experience, and get to know some cool people.

Star Trek or Star Wars? Star Wars, ultimately, but it’d be difficult to live in a world without both!

If you could live in any other country for 2 years, where would you go? Ecuador

What dish would you bring to our community picnic potluck? Fancy cheese and crackers.

Now That We’ve Been Introduced…

What do you do: I’m a disability advocate with over 20 years experience (volunteer and paid) in Ontario’s developmental services sector (support for intellectually disabled people.) I am also a small business owner, writer and hired nerd (website development, social media management.)

2. How did you come to doing what you do? How has your career trajectory flowed?

I decided when I was 15 that I wanted to be a social worker. My mother told me that I needed to get some volunteer experience in that field, so I answered the call for youth representatives on the steering committee that was investigating the feasibility of amalgamating the children’s services in my county, and sat on the amalgamated board for a year.

I also joined Community Living’s “Circle of Friends” program, and was matched to be a friend to an intellectually disabled women; we are still friends. I discovered that I liked volunteering with Community Living, which is a support agency for intellectually disabled individuals. I did a cooperative education placement with them and sat on their board. When I went away to Queen’s University, I volunteered with a similar agency.

In 1999 I had a small stroke because of an arteriovenous malformation. The stroke didn’t do permanent damage, but my life was on hold while I waited for a surgery date to treat the AVM. I lived at home and volunteered at Community Living. I started to think, “I like this work. I’m good at it. I could do this as a job.”

I applied for the Developmental Services Worker program at Loyalist for the fall; in Ontario, service agencies like Community Living prefer that applicants have the DSW. However, after a craniotomy in May to treat the AVM, I had a much larger stroke that wiped out my left side, and I spent the next 6 months doing in-patient stroke rehabilitation. I wouldn’t go to school until 2002, and it took me two years to graduate from a one-year program.

But I was glad that I got a chance to go to school as a disabled person, learning about how to support disabled people. I thought about the material in ways that I don’t think I would have otherwise, and I see now that ideas like ableism and privilege were bothering me even then, even though I didn’t have the language to talk about them.

The school and I disagreed on a number of philosophical points, sometimes very strongly. At 25 years old, I was among the older students in the class, and I’d had been volunteering with Community Living for ten years – I was fiercely protective of it and the way it did things, and dug in my heels at perceived slights towards agency supports in general.

For much of it, I now see what the teachers were trying to say, and know that I would not now disagree nearly so much when they talked about how, for example, natural supports are preferable to agency supports (although I think that this is a simplistic expression of an idea that can be quite complex in practice.)

I was told by many people that I wouldn’t get a job in my field, granted that I walk with a cane, have almost no function in my left hand, and don’t drive because of a seizure disorder.

But 2004 started a period where I worked several jobs in developmental services, education, and mental health. However, by 2011 the work dried up for me, and I was jobless for over a year. Social services work was changing – the people that agencies were hiring needed to do everything, including highly physical support work and driving. I couldn’t do the lifting and fast service involved with retail. As the long period of unemployment stretched on, I started a blog to kill time and to say some things that I needed to say about disability. I taught myself social media to promote “Girl With The Cane” and people eventually started to read.

When I finally did get another job with a website start-up doing customer service and administrative work, I kept blogging. I had also started my own small business, where I did writing and social media management.

I’d always liked to write. I’d written a small book of essays (now out of print) about having the stroke, and local people had seemed to like it, but I’d never considered that people might like what I had to say about disability on a large scale.

I’ve never made much money with the writing, but I don’t really care – I’ve met so many interesting people through the blog, and learned so much that training and school had never mentioned, that writing the posts is totally a labour of love.

3. Where would you like to see yourself in 5 years? I’d love to be supporting myself with my writing and advocacy work, but I know it’s very difficult to do.

4. Not to be morbid, but what do you want people to remember about you when you’ve gone? That I didn’t let my disabilities stop me from doing what I wanted to do, or use them as an excuse to not to what I needed to do.

5. Who or what inspires you? At the risk of sounding inspiration-pornish, the people that I’ve supported inspire me.

Some of them have been young adults making difficult life decisions without support networks that I took for granted at their age. Others, adults, grew up in Ontario’s system of institutions, most likely enduring decades of abuse that they may not even know how to talk about, only to find themselves having to start new lives with new support services in towns where they knew no one once the institutions closed. I find their courage deeply moving.

About Disability

1. If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say? I really struggled with how people reacted to my as a disabled person. For example, when I was doing in-patient stroke therapy in Ottawa, I met people from my town while shopping in a mall, using my wheelchair. I broke off the encounter almost immediately; I was convinced that I could see pity in their eyes, and it infuriated me so much that didn’t use my chair in my town once I returned home.

I’d tell that girl now that she gave up an awful lot of her power that day because of something she fancied she saw in someone’s eyes. I’d talk to her about internalized ableism, because she wouldn’t have known about that. I’d tell her that she can’t control how her disability makes people act around her, but she can control her reactions, and whether her response to other people’s dehumanizing treatment (intentional or unintentional) is to let it make her small and meek or full and assertive of her right to be treated with the dignity that she deserves.

2. What do you like about your particular disability? I have been a writer from an early age and I love to read. I’m sure I would have found a way to do both if my stroke had affected my ability to do those things. However, a few days after my craniotomy, I tried to read a book, and I couldn’t make the words make sense, and I *panicked*. I am grateful that the damage from my stroke is 98% physical, that I have no accompanying pain (post-stroke pain can be terrible), and that I can read and write the way I always did. I’d manage if I didn’t, but I’m glad that I don’t have to.

3. Any one thing that you wish people would *get* about disability? People tend to dehumanize disabled people in a variety of ways. They assume that it’s okay to force help on us, to touch us without permission, to ask intrusive questions without a second thought, to assume that we don’t need access to sexual safety options and reproductive rights because we are non-sexual…I don’t see why it’s so hard for non-disabled people to see that disabled people are, first, people, and that if you wouldn’t treat a non-disabled person in a certain way, then you shouldn’t be treating a disabled person that way either.

4. What single piece of technology makes your life easier? Electric toothbrush. My stroke affected my dominant hand. I can do everything now with my non-dominant hand that I used to do with my dominant hand, but my non-dominant hand will always be a little weaker. My teeth are better cared-for when I use an electric toothbrush, as opposed to the manual brushes that I used pre-stroke.

Welcome to “Voices from the Disability Community: – the series that introduces interesting people with various disabilities by asking the same set of questions to everyone. The point of doing that is share the diversity within the disability spectrum and experience, and get to know some cool people.

So, without further ado, please meet Frank Verpaelst!

________________________________________________

Frank Verpaelst

Getting to Know You

Your name:

Frank Verpaelst

What’s your connection with disability?

I was born with dwarfism.

Star Trek or Star Wars?

Definitely BOTH! (Sorry, no way to split these two apart.)

If you could live in any other country for 2 years, where would you go?

Definitely one of the Nordic countries, where they have some pretty humane social programs and attitudes.

Now That We’ve Been Introduced…

I’m a semi-retired and mostly stay at home blogger, writer, public speaker, artist and folk musician. Of course, that all happens when I’m not busy being a father and husband.

How did you come to doing what you do?

All of my recent activities are self-taught, and gained through a life of learning what I love to do most.

How has your career trajectory flowed?

As crooked as my scoliosis. I’m a recovering computer geek, who has officially given up working for business people.

Where would you like to see yourself in 5 years?

Right where I am now, at the end of my keyboard, communicating with the world about how awesome many people with disabilities are. Except, with more book sales. LOTS more! (Just $40,000 per year would be perfect).

Not to be morbid, but what do you want people to remember about you when you’ve gone?

Promote my books, so that I can keep taking care of my family after I’m long gone.

Who or what inspires you?

Zen Buddhism, mostly the aspect that greed and human desires create most of our suffering. Success in life is not the point of it all. Taking care of each other, and the planet, is what matters most.

About Disability

If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say?

Don’t be your own worst enemy. Don’t believe the illusion society tries to impose on us. EVERY person has abilities, everyone has limits. Avoid your “impossible to change” limits. Find your talents, what makes you happy, and develop those aspects.

For example: As a dwarf with serious osteoarthritis and scoliosis, being an NBA player was not likely to happen. But as a lover of sports, I chose to coach Lacrosse instead to feed that aspect of my soul.

What do you like about your particular disability?

Being a very short and thought of as disabled man, I get underestimated and discounted ALL the time, even to the point of ridiculousness. Then BLAMO, people wake up and realize: Hey, this guy can DO stuff!

Any one thing that you wish people would *get* about disability?

I hinted at it earlier: Disability is an illusion. Because the majority of society is superficial and materialistic, THAT should be my measuring stick? I don’t think so!

We are biological units travelling in the universe. Beat up VW Bug, fancy sports car, family-style wagon, whatever: You will never understand the beautiful spirit of who is driving the chassis, until you talk to them, and go for a drive with them.

What single piece of technology makes your life easier?

OH, my lovely computer. It feeds and unlocks the genie inside of me, and leverages all of my creative talents like nothing else.

Are you interested in being featured in this series? Fantastic! Send me an email (below) [contact-form to=’meriahnichols@gmail.com’ subject=’Interested in Being a Voice in the Voices from the Disability Community Series’][contact-field label=’Name’ type=’name’ required=’1’/][contact-field label=’Email’ type=’email’ required=’1’/][/contact-form]

If you could live in any other country for 2 years, where would you go?

China – so much opportunity for growth while avoiding western mistakes.

What dish would your bring to our community picnic potluck?

Ribs – the process is messy, but the result is worth it.

Now That We’ve Been Introduced…

What do you do: I run a research and investment company that Translates Different into Value for global businesses, governments and investors. Disability is our muse.

How did you come to doing what you do? How has your career trajectory flowed?

I started my career with Citibank in Risk Management. I found my way to Columbia Business School and a job as a Portfolio Manager with Merrill Lynch where I managed $6B in various capacities. While at Merrill, I founded Lime – a non-profit recruiting firm connecting PWD to great firms – and realized that the world was massively ‘under-valuing’ disability as a market. Over the last 8 years under the Return on Disability brand, we built the data, process, and tools that our customers need to generate value in the disability market. We are now prepping to apply our model to women, race, LBGTQ and other non-traditional markets.

Where would you like to see yourself in 5 years?

Having proven a model in business and investing where serving customers ‘outside the norm’ leads to out-performance for investors and better lives for people, our business is profitable, on every continent, and in the Inc. 5000.

Not to be morbid, but what do you want people to remember about you when you’ve gone?

He influenced others to change their actions to change their lives.

Who or what inspires you?

When there is clear value in someone (or a billion someones) that most cannot see, but strikes me as obvious. Opportunities like that are not supposed to exist, yet here we are. If that doesn’t excite you, check your pulse.

About Disability

If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say?

I used to really struggle with the disability “community” – these groups that claim to represent PWD, mostly condition-based charities. Their messages, agendas, and results did not match (even a little bit) the data underlying PWD that our research was uncovering. After sitting on a few boards and trying to work with a few of them, I realized the total disconnect between the “community” and the market of PWD. The groups are stuck on a ‘funding treadmill’ where their survival does not allow them to take the risk required for change to occur. Ironically, the ones that avoid change are going to go away. Real change in disability (and we need/want it) will come from outside the “community” via intentional disruption. I wish I understood this more clearly 10 years ago. I’ve been trying to help the “Community” change, when I should have been disruptive from day 1. Ironically, most would say that I’ve been very disruptive – but this was me being ‘diplomatic’. Today, I’m 100% focused on market demand, not “community” agenda.

What do you like about your particular disability?

I’m told that I have CP. It causes me to be very deliberate about most things I do and say. To compete and deliver at the highest levels as an Entrepreneur, a husband, and a dad I have to do things that 80% of the world just won’t consider, let alone act on. That gives me an incredible advantage over most folks. I do things better because my process is deeper and higher quality. I’m a brutal prioritizer – so I do fewer things, at a level of quality that few get to. That is driven by my membership card as PWD.

Any one thing that you wish people would *get* about disability?

It’s large. It’s normally distributed like everything that is large. In that distribution are the same demands, hopes, and dreams as every person on the planet. If that was well understood by brands and governments – backed by data – PWD are re-valued in 3 years.

What single piece of technology makes your life easier?

I’m picking 2 – 1 not AT, one AT:

My Bloomberg API – I can pull any financial data from anywhere in the world to our Excel models. I cannot imagine life without it.

My King Keyboard – Built in 1983, it’s a large keyboard with 1-inch diameter keys. Kinda pathetic that in 2016 I can’t find a better solution. I CANNOT WAIT FOR BRAIN TO COMPUTER INTERFACE – my productivity will explode. By the way, if you have a working King Keyboard lying around, I’ll pay you cash for it. I’m down to 2 working keyboards, and if they break, I’ll be forced to invent a working brain-to-computer interface, and that won’t be pretty.

Star Trek or Star Wars? So, I haven’t seen any of Star Trek; I’ve at least seen some of the Stars Wars movies but…not my favorite. I guess I pick Star Wars because in the new one, Rey is pretty awesome.

If you could live in any other country for 2 years, where would you go? I’d say Israel because it was so incredibly lovely when I went there.

What dish would your bring to our community picnic potluck? Easy question! My mom’s brownies. Or rather, her recipe that I’d bake.

Now That We’ve Been Introduced…

What do you do: I’m a writer, communications consultant, speaker and disability rights activist. Kind of a stock answer, I know. Basically, everything I do can be summed up in two words: language and disability.

How did you come to doing what you do? How has your career trajectory flowed? My first venture into advocacy happened through an extremely public platform: Sesame Street. I appeared on 7 episodes, essentially playing myself, but with a different last name. My role was to teach viewers about my life as a disabled person in a fun, friendly way. I suppose I can credit my time on Sesame Street as the launchpad for my career, but more to the point, I really discovered my career goals during college. Initially, I was studying to become a high school English teacher, but midway through college, I really began to come into my own in terms of embracing disability as an identity, so this led me to change paths. I took a leap of faith and left the teaching program, continued on to get my English degree, and then was chosen for an internship through the American Association of People with Disabilities. I finished that internship in August 2013, and have since been working fulltime in my niche field of disability communications.

Where would you like to see yourself in 5 years? Wow, so, I’ll be 30 in five years. I can honestly say I hope to be doing exactly what I’m doing now – working in communications, writing, and speaking – on a higher level. And personally, I’d love to be completely settled in a relationship at that point in my life, but if there’s anything I’ve learned, it’s that the future is never an exact science.

Not to be morbid, but what do you want people to remember about you when you’ve gone? I hope to leave a legacy not only as someone who made the world more accessible to the disability community, but also as someone who made ideas and experiences surrounding disability more accessible to the world. But really, if I leave this earth knowing that I’ve had a positive impact or made a difference for even one person, that will be enough.

Who or what inspires you? I look up to leaders in the disability rights movement, the ones who truly demonstrated that disability rights are civil rights. I deeply respect and admire Ed Roberts, Justin Dart, Jr., Judy Heumann…the list goes on. It’s my hope that these will become names as common as Dr. Martin Luther King, Jr. And most of all, my mom and dad inspire me to continue going. Always.

About Disability

If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say? I actually wrote a letter to my younger self a couple years ago. I wish I could reach through space and time to hand it to 15-year-old Emily, who was struggling mightily with body image and self-esteem, to let her know that her mind and body are so very worthy of love and respect exactly as she is.

What do you like about your particular disability? I like – no, love, really – that it is a part of me/my identity that I share with my mom. My mom has the same disability as I do: a genetic joint and muscle disorder called Larsen syndrome.

Any one thing that you wish people would *get* about disability? Oh, so many things! Since I have to narrow it down to one, the biggest thing I wish people would realize is that identity is deeply personal. I call myself a “disabled woman” because I consider disability to be as much a part of me as my other identities and attributes. Of course, it is not the only facet of my identity, nor is it the only thing I use to define myself. And as much as I embrace my disability as an identity, I respect that this isn’t the case for everyone. So really, please don’t tell someone how to identify. Let people choose for themselves.

What single piece of technology makes your life easier? My power wheelchair. Without a doubt, the most valuable thing I own. It is my freedom.

What’s your connection with disability? Person with LD and who stutters. Daughter of a father who is hard of hearing–also fourth generation Disabled American on that side. Granddaughter of a grandmother with post-polio

Star Trek or Star Wars? Spaceballs

If you could live in any other country for 2 years, where would you go? The most I have been out of the country is two days in Mexico City to see Pearl Jam (my boyfriends idea, although we did go to Frida Khalo’s house).

What dish would your bring to our community picnic potluck? There is a really great bakery I go to in Hayward, California–The Cupcake Shop. Everycake from here is amazing with tons of frosting on it, but if I had all the cakes in their shop on a raft that was going down, I would choose the Apple Pie cake with caramel layered in with both butter cream and creamcheese frosting.

Now That We’ve Been Introduced…

What do you do: Comedian and professional speaker

How did you come to doing what you do? How has your career trajectory flowed? I started comedy 6 and a half years ago. Previously I had taught and done trainings, but still believed that I couldn’t be a stuttering stand up comedian. It was a childhood dream, but fell off my radar. After going to a National Stuttering Association conference, I was changed forever! I came back, soon broke up with my then boyfriend and started comedy.

Where would you like to see yourself in 5 years? I am working on a book or essays from my life and I hope to get the published in the coming years. I also hope to continue to do professional speaking.

Not to be morbid, but what do you want people to remember about you when you’ve gone? Hopefully they get the message to be less of an asshole around disability issues.

Who or what inspires you? The absurd! Especially as a comedian with a disability, I always shocked and the strange things people say. Right now I am a little obsessed about telling the story of my friend who stuttered and was a virgin a few years ago. His psychotherapist told him that once he had sex he would stop stuttering. Seriiously?! I never saw that in the list of treatments for people who stuttered. Anyways, my friend eventually started seeing a really great woman and I knew it was going somewhere. One Sunday morning I got a text from him that read, “I still stutter.” Reading between the lines, I texted back, “Keep trying.”

About Disability

If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say?

I am currently working on an essay titled Stutterer Interrupted. I have come to realized that the interruptions I have experienced as a person who stutters are just not from people who finish my sentences because they are impaitient or “trying to help.” The interruption also came about in my development as a person, most glaring in my teen and early adult years. The way that I dealt with my stuttering and learning disability was to put a barrier up which then interfered with many of the typical ways people develop.

What do you like about your particular disability? For my learning disability, I like the divergent thinking that I experience and my ability to look at things differently. For my stuttering, I like the community I am part of but I also like that stuttering is like an asshole detector. If someone is an asshole then my stuttering will reveal that pretty quickly.

Any one thing that you wish people would *get* about disability? I wish the media had better images of people who stuttered. We are usually portrayed as pretty screwed up. My favorite example is Elvis’ last film Change of Habit. Mary Tyler Moore plays a nun/speech therapist who is Elvis’ love interest. Elvis or course is a singing doctor in a poor multi-ethnic neighborhood who cures a girl of autism just by loving her. The last scene shows MTM dressed as a nun in the church where she has to choose between Jesus and the saints and a singing Elvis. So great!

There is a young man who MTM sees in speech therapy who stutters. Apparently her interventions didn’t help his stutter or to establish rapport because he tries to murder her with a knife toward the end of the film. The message was that he found the power in a knife because of his speech issues. Classic stutterers are murderous psychopaths! Just an FYI to everyone out there. Pretty much most people who stutter are not going to kill you and Elvis can’t cure Autism.

Stuttering is a neurological difference in the brain. It is somewhere in the left hemisphere. I wish more people understood this! It might help people understand that there is nothing wrong with me and I don’t need their advice to slow down and breath–as if I never thought of that!

What single piece of technology makes your life easier?

Technology only helps people who stutter in so far that it connects us online. There are podcasts and online communities that help us feel a sense of community, which can be difficult when you are only 1% of of the population.

For my LD, technology helps a lot. Spell check and just the ability to type are wonderful. Also I read using text to speech and that also is pretty awesome!

Getting to Know You

1. Your name: Ken Stein

2. What’s your connection with disability?

Resume-Sounding, nonetheless …
(I do advise giving it a 6 second scan)

For the past 45 years, I have worked to further the cause of independent
living, disability access, and disability rights. An early staff member of
Bonita House (Berkeley’s first Halfway House for people with psychiatric
disabilities), and the Berkeley Center for Independent Living (beginning
in 1974), I was the Program Administrator of the City of S.F. Mayor’s
Office on Disability from 2002-2013. For the ten years prior, I worked at
the Disability Rights Education and Defense Find (DREDF), as Manager of
the national U.S. Department of Justice ADA Information Hotline.

For the first 12 years of the ADA (at the Pacific DBTAC and DREDF) I
provided ADA telephone tech support to almost 70,000 members of the
public, as well as the public and private sectors. We had to log all of
our calls.

In the sixteen years prior to the passage of the ADA, I had done a lot of
research, writing & editing of reports, articles and newsletters; provided
disability-related I&R (information and referral) to the public; at CIL,
CIL’s Disability Law Resource Center / DREDF, the City of Oakland’s Access
California Project, etc.

I am proud of the things I have done, and consider it a blessing that I
have been able to be a part of, and witness to, the development and growth
of a movement that has literally changed millions of people’s lives for
the better, all around the world. That’s not to say the job is done. By
any means!

3. Star Trek or Star Wars?

Star Trek

4. If you could live in any other country for 2 years, where would you go?

The United States, Berkeley, in 1890 and 1891.

5. What dish would your bring to our community picnic potluck?

My mothers brisket.

Now That We’ve Been Introduced…

1. What do you do:

I am retired. Am the husband to my wife Ingrid Tischer, who is the
Development Director of DREDF and a writer extraordinaire.

As for what I am doing *right now*, this past Saturday I began organizing
a local demonstration against the film ‘Me Before You’ that opens Thursday
at the Shattuck Cinema in Berkeley. And this week, I am working at CIL
helping to I.D. old photos in their collection, before they go off to the
Bancroft Library.

2. How did you come to doing what you did?

It’s a long story. Basically, when I was 24, I was looking for a job that
would let me sleep till noon. One thing led to another.

Not exactly flowing, but all this stuff as well, speaking well of myself
in the third person. (Again, I advise a 6 second scan).

PHOTOGRAPHY

A noted photographer, Ken’s photos were the centerpiece of a six month
long 2007 multi-media / photo exhibit: “Berkeley’s ‘Other’ Revolution:
Celebrating 35 Years of Independent Living, Disability Access, and
Disability Rights.,” in the windows of Rasputin Music on Telegraph Avenue,
which commemorated CIL’s 35th Anniversary, the 30th Anniversary of the 504
Demonstration, and honored Berkeley’s role in the birth and development of
the independent living movement.

In June 2008, I was the featured photographer and keynote speaker at
“History, Progress, Transformation: Vision of the Future,” a disability
rights history photo exhibit at the Smithsonian National Portrait Gallery
in Washington D.C., held in conjunction with the U.S. Department of
Labor’s national disability employment summit, “Transforming the American
Workplace: A 21st Century Vision.” Over the years, my photos have
appeared in a wide variety of publications and helped to give a visual
voice the burgeoning disability rights movement.

I am very proud of the fact that one of my photos (at their request) has
been included in the library collection of the National Civil Rights
Museum, former site of the Loraine Motel, in Memphis.

HISTORY

I was a Co-Founder and Past President of the Berkeley Historical Society.
In 2000-2001 while at DREDF, I developed and was Project Director of the
Disability Civil Rights History Project, a landmark model project that
taught disability rights history to primary and middle school students in
the Berkeley public schools.

In 1996-97, I organized and was the Steering Committee Chair of The 504
Sit-In 20th Anniversary Celebration and Commemoration. In conjunction with
the Anniversary event held at the Bill Graham Civic Auditorium in June
1997, the Committee (which served a free dinner to over 650 people!)
produced a commemorative book, an 18 minute Video documentary, “The Power
of 504”, and the 58 minute radio documentary, “We Shall Not Be Moved”. In
more recent years, I have served as a guest panelist and consultant on a
number of disability rights history and disability awareness panels. My
‘504’ picket sign has been on display in the Smithsonian Institution’s
National Museum of American History Exhibit ‘The Disability Rights
Movement,’ adjacent to the Greensboro Mississippi Lunch Counter.

3. Where would you like to see yourself in 5 years?

Above ground.

4. Not to be morbid, but what do you want people to remember about you when you’ve gone?

I’m with my dear old friend Allen Lee Brite (1943-1972), well-versed in
Eastern philosophy, he once mentioned to me that there, as well as in all
other religions, a common theme is that the past is fertilizer for what
follows. I believe that to be true.

Be that as it may, going to be 69 later this year and having been retired
for three years, I think I am pretty much already done, and much of the
book of my life has already been written. So perhaps not inappropriate to
provide some nice dust jacket blurbs.

The three nicest things that other people have ever said about me:

One time about 20 years ago at a conference of some sort, Judy Heumann
introduced me to someone by saying: “Oh, do you know Ken Stein? He knows
where all the bones are buried.”

—

The second was an email that Corbett O’Toole sent to me out of the blue in
2000:

“It was great to see you. I don’t know if you feel it, but you are a
critical part of the movement. Your contributions have kept us alive (even
as many of us were dying). You held onto our history, when we didn’t know
we had one. Kept a deep understanding of our place in making history, when
we were too stoned to notice. And are available every time someone finally
realizes that we need to know who we are and where we came from.

You are the reason that I have finally turned to documenting the disabled
women’s community. Your unwavering dedication is inspiring and profound.

Thank you.
Corbett

—-

The third was at a City of SF Mayor’s Disability Council Meeting some
years ago. I had complemented someone who was involved in a peer mentoring
program to get people out of Laguna Honda Hospital, saying that the design
of their program was much like the original foundational concepts of CIL
and the independent living movement.

He said at the microphone that my compliment meant a lot to him because
he said, “we all know that you were one of the pioneers of the Independent
living movement.”

At first I was very much taken aback by that. Because prior to that, I had
never thought of myself in that way. Whenever I gave talks about the
history of the bay area independent living movement, I would always begin
by saying that “I was never one of the leaders of the movement but I was
there at the time.” Indeed for a long time I thought of myself as the
Forrest Gump of the Independent Living Movement.

But his saying that really made me realize that I and all of the great
many others who worked together back then in the early days (far too many
of whom have since passed away, all but un-remembered) were indeed true
pioneers, in the best and truest sense of the word.

5. Who or what inspires you.

People who are able to follow the fire in their guts, who are able to
remain true to themselves; and who are somehow able to combine their
talents and their art and their careers. In brief, my children Emily &
Aaron; and Paul Newman.

About Disability

1. If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say?

Hang on. It’s going to be a bumpy ride.

2. What do you like about your particular disability?

Not a lot. Has cost me a great deal. For the short version of a long
story

That it exists. That it is a demographic. That it is part of everyone’s
life. That it needs to be on the table for public policy planning. That
it’s impacts and significances increase exponentially across
intersectional characteristics like gender, race, sexual orientation,
class etc, and none of these groups get that.

Introduction: I’ve known Katherine for a long time – since she was just started off at UC Berkeley. I’ve followed her career trajectory with great interest, fascination and tremendous awe. This single mother of 3 pushed herself through school (- at a non-traditional age) and went on to complete her Master’s and is now teaching in the public school system.

Her teaching job? She wandered into by attending a Teach for America career session at Cal – they were inaccessible. When she pointed that out, they became interested in her and wanted her on their team, saying they needed people who could – and would! – teach them how to do it.

The conversations with them swayed her from her original plan (- which was law school) – and she became a teacher instead.

Meet Katherine. One of my favorite people in the world.

**************

Getting to Know You

Your name: Katherine ReyesWhat’s your connection with disability? I lost my hearing when I was 4 years old, which merged me into the concept of disability. Star Trek or Star Wars? Star Wars, I guess. Though I didn’t see it captioned until I was 18. I had no idea Darth Vader was Luke’s father. That’s not something you can tell just by looking at the acting. That messed me up pretty badly.

If you could live in any other country for 2 years, where would you go? Hmm. China?

What dish would your bring to our community picnic potluck? Depends on time of the year. During the school year, I’d bring by cookies from Costco. If it were summer, I’d probably bake a coffee cake.

Now That We’ve Been Introduced…

What do you do: I teach deaf and hard of hearing kiddos. This year, I work with high school kids.

How did you come to doing what you do? How has your career trajectory flowed? I have always known I would work with the deaf population somehow. I felt that my own lot in life was very limited and struggled to get past this limitation. When I got accepted into UC Berkeley, I knew it was my calling to help other DHH individuals succeed in every way possible. I was planning on a career in disability law with an emphasis on the deaf population but found myself with Teach for America after graduation. That is when it hit me…it is better to teach empowerment and success while people are young so that they can grow up to be their own advocates.

Where would you like to see yourself in 5 years? I hope to spearhead a school that serves all DHH kiddos who desperately need a good education. This is especially ideal in areas where education and deafness conflict with one another, such as Tennessee.

Not to be morbid, but what do you want people to remember about you when you’ve gone? Yikes. I’d like them to remember that I fought hard for “my people”. Heh.

Who or what inspires you? A lot of people inspire me. My friend, Meriah, who is always so positive and free-spirited. My children, who are so resilient, hilarious, and stubborn. My fellow co-teachers, who fight everyday to ensure that their students are getting the education they deserve. My mother, who makes people uncomfortable but has a lot of logic behind her reasons. People who relentlessly pursue a better life for themselves and others. Gandhi, who believed in peace regardless of circumstances. My students who struggle but won’t give up. I am inspired everyday.

About Disability

If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say? I don’t think I could’ve said anything to my former self. I needed to experience all my downfalls in order to embrace who I am, including aspects of myself that I hated. And boy did I hate my disability. It took time, education, friends, and family for me to finally come to terms with who I am—there isn’t a phrase that can be uttered to completely erase the stigma attached with something that society doesn’t generally accept.

What do you like about your particular disability? I like that I can sleep like a bear at any time. I also feel that my deafness gives me a sense of peace that many hearing people don’t seem to have.

Any one thing that you wish people would *get* about disability? I wish people would learn to see disability as another aspect of a person, such as their skin color, height, certain personality trait, and their character. Disability isn’t something to fear. It is something to be appreciated and valued. I often feel that fear generated towards those with disabilities is akin to the fear whites had towards blacks or Spaniards towards Aztecs. It is unfounded, ignorant, and blind.

What single piece of technology makes your life easier? Definitely the iPhone.

*************************************Where else can we find you online? No where else—yet!

Getting to Know You

I was born with a disability called Arthrogryposis. It means that my joints don’t bend very much, and I use a power chair to get around.

Star Trek or Star Wars? Star Trek…definitely Star Trek. The Next Generation to be precise, I was indoctrinated at the tender age of 5.

If you could live in any other country for 2 years, where would you go? I would love to live in Ireland for 2 years.

What dish would your bring to our community picnic potluck? I would bring mac n cheese with the super crunchy, baked on topping.

Now That We’ve Been Introduced…

What do you do:

For the moment, I work at the Center for Independent Living as a Systems Change Advocate. I get to network with folks from my community as well as all over the state who are engaged in disability advocacy. This position has offered me an incredible chance to not only develop a more well rounded understanding of the systemic barriers that people with disabilities face, but to also figure out how we can work together to change them. My next adventure is grad school. I was just accepted into a PhD program in Clinical Psychology, so I’ll be leaving CIL in late July to go back to being a full time student.

How did you come to doing what you do? How has your career trajectory flowed?

I started working at CIL right out of college. My undergrad degree was in Biopsychology and I was pretty involved in campus disability organizing while I was a student. When I finished school I knew that I wanted to find a job with a focus on the disability community, so I applied for a summer internship with CIL’s Youth Services Program. After the summer ended, the internship opened up to the position that I’m in now and I’ve been at CIL ever since. It feels a bit like I’m coming full circle now: I’m going back to school to study Psychology, but having had the opportunity to work at CIL I’m fairly certain that I want to continue working in the disability community in one capacity or another for a long time to come.

Where would you like to see yourself in 5 years?

Ideally I will be finishing up my grad program within 5 years. After that, I’d like to either use my degree to direct a DSP program or provide mental health services to people who are adjusting to new disabilities. It would also be amazing to live abroad for a year or so, as well.

Not to be morbid, but what do you want people to remember about you when you’ve gone?

I want to be remembered as someone who died without regrets.

Who or what inspires you?

I’m inspired by people who don’t give a crap about what everyone around them thinks, and who do what they know is right even if they are being told that they can’t or won’t succeed. I’d love to be able to say that the person who embodies this for me is a figure like Gandhi or Amelia Earhart, but the huge nerd in me immediately thinks of Brienne of Tarth from Game of Thrones.

About Disability

If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say?

I would tell myself that there are a lot of idiots in the world, and I will meet a decent number of them. But to remember that when people act like idiots it’s a reflection of their own lack of understanding and not a reflection of something being inherently wrong with me. And I would also say that it is not my responsibility to educate all of the misinformed people out there, at some point they get to take that on themselves.

What do you like about your particular disability?

I like the fact that I’m small. I can save money by buying kids sized clothes, I don’t spend much on groceries, and my friends can carry me up to their inaccessible houses.